Are we coming to the end?

Hi Rosy
I'm really not sure whether I'd want to know my prognosis or not.
I suppose I'm not really so close to the end though I think.

I can't imagine how it feels for you to have that knowledge and your husband not to and my heart goes out to you. I think though if I were so poorly I would sense I'm close but not like to admit it.

i so hope that the time left is not too painful for you both and that you come through it all ok.

I too will be thinking of you

Paul

Edited by member 13 Jan 2016 at 01:28  | Reason: Not specified

Thanks for all your replies. It really helps to have support from people who know what it's like. 

The last 24 hours have been awful. He started getting generalised pains yesterday evening which got worse despite co-codamol, ibuprofen and MST. At midnight he finally let me call 111. What a joke! First an advisor who couldn't understand why he had bone pain with prostate cancer despite my explanations, then go through it all again with a nurse, then told a doctor will call within 2 hrs. He tried to get some sleep while I waited for the call which came at 1.30am. Then D said that it was easing off a bit so not to bother with the doctor - he would talk to the hospice team in the morning.

Next thing I know is him waking me at 8am to say he hadn't slept all night because of pain and had got a GP appointment booked. After an hour in the waiting room we saw the doctor. Some blood and protein in his urine so possibly a UTI. Antibiotics and Oromorph prescribed. Chemist didn't have Oromorph so I had to drive round to find one that did. Finally at 12md he took co-codamol, ibuprofen and Oromorph together - an hour later no change! Then I phoned the hospice team - now to use paracetamol, ibuprofen and 'Oromorph as often as you need'. A bit later he was sick - sorry to be revolting but there were kidney beans from the chilli we had 36 hours previously! Once his stomach was empty he had some more Oromorph and an anti sickness tablet and finally the pain began to ease.

He still has some discomfort in his lower abdomen, still taking the Oromorph but less distressed. He looks awful and has eaten 2 bananas and an Ensure drink all day! But finally settled in bed and hopefully sleeping. Another worry was that this evening he said he had some difficulty peeing. He has been since with no problem but it is an obvious worry.

As far as him knowing his prognosis he made 2 brief comments yesterday indicating that he knew he was talking in months now. So he does know but chooses not to talk about it which is fine if that's how he wants it. I see that lots of people use sayings - I think David's would be 'I did it my way'

The hospice team will phone tomorrow so I will be asking for someone to come and visit.

To add to all this we have another major family issue which affects, and is affected by D's health. This issue also kicked off again yesterday causing even more stress! No peace for the wicked!

 Rosy

 One small bonus - I got a letter from our pensions dept saying that if I do go onto half pay due to sickness it will not affect my pension. That's one thing less to worry about.

Edited by member 13 Jan 2016 at 22:56  | Reason: Not specified

hi rosy
I dont know if you are able to get a number for your cancer hospital I was given a card and told any issues to ring the number on it, have used it once and after I explained how I was went straight to hospital and got checked out, blood, urine and xray all done in 2hours, yep I realise my situation at moment is completly different to yours but its the only thing I can think of to try and help you,my thoughts are with you

regards
nidge

I don't comment much but I do read all of your posts and my heart goes out to your situation, one day we will be where you are know and maybe in the not to distant future.

I wish that I could offer some magic words to make everything fine but I simply can't what I can do is offer a hand for comfort and a listening ear to help ease your heart ache . We are all here to try and help you through this difficult time.

BFN

Julie X

I am another one that reads your posts without adding anything.

So just to say how I admire your courage and have every respect for you and your family.

All the best.

It is really hard when you see your OH struggling with just day to day things. The mind is willing but the body is weak. I know that Mick used to get really frustrated when he needed help to get around but he did come to terms with the fact it was better to get every little bit of help he could to stay mobile.

We managed to get all sorts of little things to help from our district nurse. Mick had a special air pad for his chair it covered the full length of the chair right down to the recliner. It had a special pump to blow the inner bit up and the whole thing went into a navy fleece like cover. He loved it.

He also had two walking sticks sized for his 6'2" frame, these went everywhere with us even on good days. He used them to keep stable as he walked around our bungalow. We had a special air cushion for his bed it was really easy to set up although the nurse helped me initially. It just had to be pumped up every week or so. This and the seat cushion definitely prevented any sore spots from developing.

I bought a special grab handle which I put up in our walk in shower. It was about a tenner on Amazon and although it was only secured with suction cups, once fixed it was very secure. It just gave him a bit more confidence on his feet.

MST is a great drug for pain relief but Mick just found it made him sleepy and nauseous, he went onto Fentanyl patches instead they were so much easier, I am sure they helped to keep any pain to a minimum but with less side effects.

The lack of communication is really hard for you, so many things you would like to talk about or say, withdrawing is a very normal reaction when you know you are very ill. Its kind of hard to want to talk about anything I guess. In that respect I was incredibly fortunate. Mick chatted and joked with anyone and everyone, it took him a little while to truly open up about some things but he did. in some cases just in time, but at least he did. I suppose all you can do is offer as much encouragment to talk as you can, if and when he wants to talk then be there ready to listen.

I am really pleased you managed to evict a big elephant, it takes time to move one of these but every one you manage to move creates more light into the room.

I think of you every day and wish you all the very best

xx

Mo

Me too. All of the above in spades.

All I can offer is to tell him and show him that you love him. That will help to ease the pain.

David (another one)

I'm sitting here chuckling at the image of a mountain of elephant food and poop on the lawn! I'd rather the elephant didn't sit on my new sofas though.

You are so right Julie - I haven't managed to change David much in the 40 years we've been together so I guess I have to accept that he has very rarely discussed his feelings or emotions and that's the way he copes. At least I have lots of friends who will listen and support me and intersperse the conversation with appalling black humour which is how I cope.

Mo - the grab handle is a really good idea and I will order one tonight. I will also ask about the Fentanyl patches as he is suffering from nausea. Hopefully this will settle a bit now though as he has been very constipated but the lovely sachets have had their magic effect finally. He was definitely a bit brighter after that. We are expecting a call from the district nurses re equipment. Luckily my best friend is a community matron and advises me on what we can get to help.

We had a nice evening today (once the sachets had worked) with our son who came for the night. David even managed to raise a laugh that I hadn't made his Prostap appointment late enough in the day for him - it's booked for 5.30pm because he struggles so much to get up!

Rosy 

Always look on the bright side of life....

Edited by member 20 Jan 2016 at 01:42  | Reason: Not specified